Vasculitis UK
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Referral to Hospital

I live in the Scottish Borders a town called Peebles. When I was diagnosed with ANCA positive Vasculitis 4years ago I was referred to the Edinburgh Royal Infirmary. I have had a good relationship with the specialists at the hospital . I have recently had contact by email to the specialist who requested I get a referral from my local doctor to attend the clinic in Edinburgh. I have asked but been refused due to costs as it is not within the Scottish Borders . I then asked my rheumatologist to refer me again the answer was due to costs she was unable to do this. Surely there must be some thing I can do. Other than going private if I had the funds I would. But it is a sad day when your health comes down to money. I don't understand why I can't get the treatment that the specialist wants to give . Any information would be greatfull thanks Bill.

4 Replies

Hi Bill, I'm trying to get my head round this. Are you saying that you have been treated at Edinburgh Royal for four years?

Or treated locally but with guidance from the Edinburgh team?

Or were you treated there, but then discharged back to your local hospital?

Or is this a new referral?

I suggest that you start by asking your GP for a written letter stating why you are being refused the referral. I'm not sure how the situation in Scotland differs from that in the rest of the UK but I suspect that NHS "Choice" regulations apply the same in Scotland. These state that, provided there is sound reason, patients have the right to be referred to a hospital/consultant of their choice. In your case, the e-mail from the consultant is a very sound reason.

If you want to discuss this further, please send me a private message.

All the best - John


I am confused as well as you were diagnosed 4 years ago, ,,,where have you been going for 4 years for your check ups. are you just going to your g p. Well you do need a specialist and that is free in scotland. go back to your doctor


Hi I have been unable to see a specialist for the last 18 months. And yes it is my local GP. I have being seeing in that time . In the last 18 months I have been in and out of hospital . I have asked on severel occasions to be referred to see specialist but have been told due to costs is unable to do this . I stay in the borders region the specialist is in the Lothian district . Distance 23miles . I will ask again in the new year if don't get satisfaction I will be contacting our local MP. As I find this a disgrace . As I said before I could go private but the costs are to much. I will keep you informed on the out come what ever it is . Thanks Bill


Hi Bill,

For what it's worth, I think it's shocking too. I would not like to disparage any GP, but treatment of ANCA vasculitis is very complex and the new guidelines state that treatment should only be carried out by someone who is well experienced in managing the disease or who is working in conjunction with such a person or vasculitis centre.

It is not for your GP referral to refuse a reasonanle request for a referral and certainly not on grounds of cost. That is why it is an important first step for you to ask your GP for a written letter stating why the referral has been refused. I've never known this to fail - so far - because the GP knows he's on dodgy ground unless there are sound clinical reasons for refusing - and NHS finance is NOT a sound reason.

Good luck and Happy, Healthy New Year. John


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